News roundup

Published:

HRB invests €1.3 million to link knowledge users and researchers in health and social care

Children’s palliative care, stroke patients and women with epilepsy are among the groups who will benefit from the HRB’s Applied Partnership Awards (APAs).

Hands holding connecting jigsaw pieces

The APAs bring knowledge users and researchers together from the beginning of a research idea. And because the end users stay connected throughout the entire project lifecycle, there is much greater likelihood that relevant findings can be quickly assimilated into enhanced practice and care. 

“We want the research that we fund to be relevant and useable,” says Dr Mairéad O’Driscoll, Chief Executive at the Health Research Board.

“We also want it to make a difference. We believe that embedding knowledge users in the research process will help to achieve this and will deliver value for health, the health system, and, most importantly, for patients.”

Dr Catherine Gill, Programme Manager, Targeted Programmes and Evaluation, at the HRB adds:

“This scheme is central to the HRB’s objective of supporting health and social care research that makes a real difference to people’s lives. Also notable is its co-funding aspect, which demonstrates genuine partnership and commitment from all sides. The partners fund at least 20% of each award, thereby increasing the HRB’s €1.3 million investment with an additional €250,000.”

The partner/knowledge user organisations in this round of funding include:

  • LauraLynn Ireland’s Children’s Hospice
  • Barretstown
  • Diabetes in General Practice
  • Irish Heart Foundation
  • Central Remedial Clinic
  • Epilepsy Ireland
  • The Irish College of General Practitioners.

“There is another cycle of this award currently open with a closing date of 1 February 2023,” says Dr Gill.  “We encourage interested researchers and knowledge users to avail of the opportunity to submit their proposals by that date. Or if you were unsuccessful in the first round, to reflect on the feedback and to consider submitting a new application.”

A list of the seven awardees and the lay summaries of their projects is available below, as are relevant links and HRB contact details for interested applicants.

ENDS

Details of the Applied Partnership Awards are available in the Funding Schemes section on the HRB website. Queries can be directed to Ailbhe Lamont, alamont@hrb.ie.

Please contact the press offices at the host institutions if you would like further information on any project.

 

Applied Partnership Awards

Lay summaries, listed by Host Institution, then alphabetical by Principal Investigator surname

 

Project: Memory-making through therapeutic recreation for families of children with life-threatening conditions receiving palliative care at home: Adaptation of a digital storytelling legacy intervention

Lead applicant: Professor Veronica Lambert, Dublin City University.

Palliative care for children is a global concern as the number of children living with a life-threatening condition needing palliative care is rising. In Ireland there is a lack of support for children with palliative care needs to record their memories and of early bereavement support for their families. This research will support children needing palliative care to record their life story, plan for end-of-life with their families and provide support when the family is bereaved. We will do this by making changes to a way of supporting children to tell their story and record it digitally that has been used in the United States. We will work with Barretstown’s Children’s Charity who deliver recreation therapy to children with palliative care needs in an atmosphere of fun. We will review how digital storytelling is used in the US and work with stakeholders and families to map similarities and differences between the US and Ireland. This will help us to understand, agree and make any changes needed to use digital storytelling in Ireland. We will adapt the manuals and training materials for the team in Barretstown and test the way digital storytelling could be delivered in Ireland with families receiving palliative care at home. This will help us to understand how easy it would be to use digital storytelling in practice and if it supports families. We will evaluate any potential early benefits to families, such as how they connect and communicate, create memories, and prepare for death.  Created by families for their family this will provide a tangible digital story to keep. This research will inform future evaluations of digital storytelling and will influence Irish healthcare and our national strategic goals to enhance early bereavement support for families of children with life-threatening conditions receiving palliative care at home.

 

Project: Co-designing Life After Stroke support Pathways (CLASP)

Lead applicant: Professor Frances Horgan, RCSI University of Medicine and Health Sciences.

Stroke is Ireland’s biggest cause of acquired disability with over 7,500 people hospitalised due to stroke annually, 70% returning home with disabilities. Stroke can rob people of the power of speech, sight, and swallow; can cause paralysis, incontinence, and lifelong dependency on others to carry out the smallest, most personal tasks. Even mild or moderate stroke can result in complex physical, communication, cognitive and psychological difficulties with a life changing impact on the approximately 70,000 people in Ireland affected. Stroke survivors report feeling ‘abandoned’ after leaving hospital and ‘falling off a cliff edge’ as there are few formal community-based supports or services despite wide-ranging, complex, ongoing needs. Family members become carers without knowledge, training, or support, causing extensive stress on loved ones, relationships, employment, and finances.

This research proposal has been co-designed with stroke survivors, stroke advocates, academic experts, and specialist clinicians to propose a robust, evidence-informed solution to this stark gap. We will (1) rapidly review the evidence on good practice in community-based care for stroke survivors (2) identify existing services and how many stroke survivors there are in Ireland (3) identify care priorities with patients and carers and other stakeholders (4) co-design a costed, realistic care pathway to implement in the Irish healthcare system.
This proposal, driven by the stroke survivor involvement in this RCSI Public Patient Involvement initiative, is fully supported by national HSE Disability, the patient advocacy organisation Irish Heart Foundation and the HSE National Stroke Programme. With advancing medical care, the stroke survivor population has dramatically increased but with no accompanying increase in community-based service provision. This research will enable policy makers to understand the evidence, the prevalence, the patient and carer priority needs and the consensus care pathways to reduce disability burden on stroke survivors and families and improve population health outcomes.

 

Project: The GP Retention Project (GP-R)

Lead applicant: Dr Niamh Humphries, RCSI University of Medicine and Health Sciences.

The COVID-19 pandemic showed how important GPs are to healthcare delivery. But Ireland faces a GP workforce crisis, meaning that Ireland has a lot of GP vacancies, many closed GP practices, a high rate of GP emigration, an ageing GP workforce and a shortage of locum GPs.
The government estimates that Ireland needs 32-42% more GPs by 2028. In response they created more GP training places and extended the age of retirement for GPs to 72. These measures will help, but Ireland also needs to get better at keeping GPs in the Irish health system.
Without enough GPs, it will be hard for Ireland to deliver healthcare to everyone when they need it. It will also make it impossible to improve the health system (Sláintecare). 

Each year, many GPs opt out of GP practice – some emigrate, some retire early, some reduce their working hours. This is a huge loss to the health system and something that Ireland needs to better understand and respond to. The GP-R project will help Ireland to do that.
We will work closely with GP organisations (ICGP), policy makers (Dept Health, HSE, Medical Council) as well as with GPs and the public. We will interview GPs in Ireland to find how they work and how to better support them. We will also interview Irish-trained GPs abroad to find out why they left and what might encourage their return. We will also find out how many GPs emigrate each year.

All of the information from the GP-R project will help policy makers to strengthen the GP workforce and will help them to better support and encourage GPs to stay working in Ireland. It will also be used to inform public debate about GPs and how Ireland can support them while they care for us.

 

Project: Use of intervention mapping to adapt a transition programme for young people with childhood-onset physical disability in Ireland: the Ignition 2 study

Lead applicant: Dr Jennifer Ryan, RCSI University of Medicine and Health Sciences.

In Ireland, young people with childhood-onset physical disability receive healthcare from children's services up to the age of 18, after which, they transfer to adult services. This can be a challenging time for young people as they balance their healthcare needs with becoming more independent and participating in adult life. Transition is a process that prepares young people with disabilities to take charge of their lives and their health in adulthood. The transition process is poor for many young people with physical disability in Ireland. When we worked with a group of young people and parents to identify how we can improve transition, they identified that they need a professionally-led programme that supports them to take charge of their health in adulthood. Although several transition programmes exist internationally, they may not be appropriate for young people in Ireland. In this project, we will adapt an existing transition programme so it meets the needs of young people with childhood-onset physical disability in Ireland.

We will work with health professionals, young people, and parents to adapt an existing transition programme and produce materials needed to deliver the programme. We will then deliver the programme to 20 young people and their parents/carers. We will interview them after the programme to find out if the programme was acceptable to them. We will collect data to find out how closely young people adhered to the programme, such as how many sessions with a health professional they attended. We will also collect data to find out if it is possible to continue delivering the programme in children’s disability services in Ireland after the project ends. This project will produce a programme that improves transition for young people with childhood-onset physical disability in Ireland and may improve their health, quality of life and participation in the community.

 

Project: Health information and education resources for women with epilepsy from preconception to postpartum

Lead applicant: Dr Aisling Walsh, RCSI University of Medicine and Health Sciences.

Epilepsy is a neurological disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behaviour, sensations and sometimes unconsciousness. This condition presents particular challenges for women who are seeking to conceive, during pregnancy, birthing and parenting. For example, pregnancy can increase the frequency of seizures, but seizure medications have the potential to harm the developing baby during pregnancy.  
In Ireland there are over 10,000 women of childbearing age living with epilepsy. Yet, to date, no study has examined the health information needs of women with epilepsy and their families during preconception through to the postpartum period following childbirth in Ireland, or worked directly with women and service providers to develop health educational resources. Women with epilepsy have consistently highlighted this as a key research need in recent years. This research proposes to achieve this.

Firstly, we will identify existing national and international evidence-informed resources and the best available evidence on supporting the health information needs of women with epilepsy. Secondly, we will ask women with epilepsy, their families, and their service providers about what their information and knowledge needs are and their experiences of accessing information. Thirdly, we will undertake an exercise to prioritise and plan the information resources through group agreement. Finally, we will use all of this information collected to co-design and co-produce health educational resources with women living with epilepsy and health professionals that will be evidence informed, relevant to their needs and easily accessible.

Throughout the project, women living with epilepsy will be included as experts by experience on their own lives and medical conditions. This will add value to the research findings and views of healthcare experts on this topic and will ensure health information resources are of direct relevance to the patient population.

 

Project: Improving Children's Palliative Care in Ireland (iCPCi): using evidence to guide and enhance palliative care for children with life-limiting conditions and their families

Lead applicant: Dr Samantha Smith, Trinity College Dublin

This project will gather and examine information for improving how children’s palliative care is planned and delivered in Ireland. Children’s palliative care is not just about managing pain at end-of-life, it is about living in every sense of the word, providing supports to children with life-limiting conditions (and families) to enable them achieve goals within their own limitations. Children’s palliative care makes a positive difference throughout a child’s life by managing symptoms, arranging short breaks, and planning what to do if/when symptoms change or treatment fails.
In Ireland we don’t know how many children have life-limiting conditions and need palliative care. We have UK-based estimates which are out-of-date and not detailed enough to help plan palliative services. We don’t know how many children miss out on palliative care referral because some clinicians view it as end-of-life care, or because the definition of life-limiting changes over time with improvements in life-expectancy for some conditions. There are concerns that children with life-limiting conditions have lengthy hospital stays and have difficulty accessing palliative care across the country.

Our team includes parents of children with life-limiting conditions, children’s palliative care policymakers, planners, providers, and researchers. We will discuss different definitions of life-limiting conditions and palliative care need. We will examine national datasets on hospital stays, deaths, children’s palliative care activity and others to learn about children who are at different stages (dying, unstable and receiving emergency care, deteriorating and receiving intensive care). We will look at how complex these children’s needs are, and how they use hospitals. We will compare the geographic location of children’s palliative care services with where children with life-limiting conditions live. We will use all this information to guide and improve children’s palliative care policy, planning, and service delivery, supporting our goal of universal access to palliative care in Ireland.

 

Project: Optimising practice feedback to improve diabetes care

Lead applicant: Dr Sheena McHugh, University College Cork.

We will design a feedback report for General Practitioners (GPs) and practice nurses that shows how well they are providing diabetes care compared to professional standards and where they can improve. Health professionals need this information to deliver guideline-recommended care to people with diabetes and improve their experience of health care and health outcomes. 

We will work with Diabetes in General Practice (DiGP), an initiative of 86 practices providing care to over 3000 people with diabetes. First, we will look for examples of feedback reports used in other countries or for other conditions. We will used these examples, along with evidence on how to design audit and feedback, to make a ‘prototype’ (model) of the feedback report. We will show this prototype to GPs and Practice Nurses. We will ask them about the kind of information they need and what the feedback report should look like. Then, we will work with experts in engineering, design, and general practice to build an electronic version of the feedback report in the GP computer system. We will ask GPs and practice nurses to test the usability of the feedback report, talking out loud about how they make sense of the information. 

Why is it important?

Audit and feedback improves care and outcomes for people with diabetes. However, sometimes feedback reports are confusing and do not include the right type or amount of information. Our project will make sure feedback is designed to be effective and that health professionals get the information they need to improve care for their patients. Diabetes is one of eight chronic diseases prioritised in the Irish health system. The information we collect about how best to design diabetes feedback will be useful for other chronic diseases.

 

Host Institution press offices

Dublin City University.

Niamh O’Doherty, Communications Officer, Email: niamh.a.odoherty@dcu.ie

 

RCSI University of Medicine and Health Sciences

RCSI Communications Department Email: communications@rcsi.ie

 

Trinity College Dublin.

Ciara O’Shea, Media Relations Officer, Email: coshea9@tcd.ie  Phone: +353 1 896 4337

 

University College Cork.

Joe Leogue, UCC Office of Media and PR. Email: joe.leogue@ucc.ie